Kylie and Kyle Harrison live in Wheat Ridge, Colorado. When the couple welcomed their youngest of three daughters Kieran to their family, they should have been able to just enjoy their new bundle of joy.
Sadly for the Harrisons, they learned the day after Kieran was born that her two older sisters, 4-year-old Kennedy and 7-year-old Kinley, have a fatal brain disease.
Yes, you read that right, both of these little girls, both of these sisters, ended up being diagnosed with GM1 Gangliosidosis, which is an extraordinarily rare genetic disorder.
Now, Kylie and Kyle are trying to raise $2 million dollars to help get Kennedy and Kinley the treatment they need.
“Two of your children have a fatal, untreatable disease – they are dying.” These are the first words Kyle shared on the GoFundMe page for Kennedy and Kinley.
“Without warning, we were faced with the sobering realization that our baby girls are dying. Before this disease takes them, Kinley and Kennedy will very slowly lose their ability to walk, talk, eat…and even smile,” he continued.
Since receiving their diagnoses, the family has spent the past 4 years trying to figure out what was behind Kinley’s developmental delays.
They went to tons of specialists, booked multiple appointments, went through evaluations, and they struggled to get an answer.
Finally on June 5th, 2020, they got one, but it was nothing that they ever could have prepared themselves for.
“A full genetic screening revealed that not only Kinley, but her younger sister Kennedy both have an extremely rare genetic disorder called GM1 Gangliosidosis. We are forever thankful that baby Kieran is not affected by this wretched disease,” Kyle explained.
As of right now, successful treatment for GM1 does not exist, and the rare genetic disorder always ends in fatality for children.
GoFundMe; pictured above are Kennedy and Kinley with their little sister Kieran